We can do it.

Something that I am finding really tough is that there isn’t a fix, some medicine, a magic cure or anything at all that would help Dylan to experience a ‘normal’ life.
I love my boy, my little buddy, my curly fro, chum, cutie, handsome little man; my son.
Though if I could take this all away from him I would.
This can’t be an enjoyable life for him, he can’t communicate with me or anyone else at the moment. He doesn’t understand emotions, boundaries and many other things.
He gets so frustrated he self-harms by head banging, hitting himself in the face, grinding his teeth, throwing himself on the floor, diving at the floor head first, He also has self stimulating behaviour a lot because this world causes him to have far too much sensory input, he can’t deal with it like you and I can.
He doesn’t enjoy going out to soft play, when we go for walks he likes to stay in his pram- his little safe space, he hates going to the shops and I now only go if he is sleeping, or can be left with my husband, safely at home.
He can’t stand change, we have to keep a very strict routine otherwise it is chaos. He wouldn’t sleep, in fact sometimes he manages to run on as little as four hours sleeps for a whole day and will keep this up for a week sometimes two untill we get him back and sorted.
What he enjoys the most is being in the house playing with his letters and numbers. Though it has to be all three packs of letters all spread out across the floor and sofa, with the numbers out as well. Generally the same letters are all placed together, and so help you if you move one that he has strategically set down. His new favorite is this set of barrels he has that are like russian dolls, they all go inside each other. The first time he found these, he spent the whole day playing with them and I must have put them back together and inside each other about 500 times, it was draining. He was happy though so I did this, and by the end of the day I was mentally exhausted. I had to celebrate and joyfully tell him what colours they were, and cheer him each and every time he opened one. This doesn’t sound too bad does it, it’s not, untill you do it for an entire day.
He has meltdowns on a daily basis, when he has a meltdown he gets so confused. He wants picked up, but he doesn’t want touched so he hits out, throws his head to try to headbutt, screams uncontrollably, when you put him down he head butts walls, he hits himself in the face and throws himself at the floor. He grabs at you to be picked up again and gets really mad if you don’t but then, when you do it makes him worse again. We have a beanbag and a soft play mat so that we can put him down and he wont hurt his head and extra tall baby gates so that he can’t escape and get outside to where he would be in a lot of danger as he has no sense of fear or safety. What settles him will change from day-to-day, we have lots of tricks that we try, but as a parent it really pains when you can’t just scoop your child up and comfort them.
When they don’t find comfort in their parent, in you, it’s very tough.

I love him with all of my heart, and I will always do anything and everything to help him. I will enable him to have the best life he possibly can and to live it to his fullest potential. I will fight all the battles for him that he isn’t capable of fighting for himself.
I will make this all work out ok. I’m not in denial I know it will be a bumpy road, I know it’s not going to be easy on me, my husband, my daughter or our families.
We can do it.

-WeeOhana

11 thoughts on “We can do it.

  1. My son did a lot of stimming when he was a toddler, preschooler, and early elementary school. His thing was constantly slapping his ears. He would watch the same shows over and over again but he would hit his ears because certain noises hurt him. I didn’t understand it at first. It wasn’t until I had home visitor from his pre-school come to my house and observe his behavior. After she told me though, I thought I would ease his pain by turning the show down or turn the TV off completely. That caused the meltdowns. When he was three he was fully potty trained. We went on a trip and he had to go to the bathroom so of course his dad took him to the rest room. That was the biggest meltdown he ever had and it lasted for two hours. The sound of all of the toilets going off at once really scared him so he refused to go to the bathroom and had a meltdown right there at the airport. The looks we got as his parents for not being able to calm him down was something I’ll never forget but I will also never forget that he was in so much pain because he held his bladder for fear of any public bathroom. The plane ride was an hour long then the car ride to his grandmother’s house was another 45 minutes. We even stopped at Walmart to pick up pull-ups just so he would go but he wouldn’t. His dad tried taking him to the side of the road in the woods but to no avail. Even after we got to our destination he was still so scared to go to the bathroom. I thought I was gong to have to take him to the hospital but right when we were ready to do that, he finally went. These things our kids go through are so scary and exhausting. I can only tell you that it will get better.

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  2. We are almost 11 years down this road. Some things get easier, some get harder and some just get jumbled, but somehow we do get through. x #spectrum_sunday

    Liked by 1 person

  3. I know what you mean about taking all the pain away. But your love will help. So much of this sounds like when our son was younger (he’s now 8) and it is remarkable how far he has come. I think it has made him a stronger, more determined young man. #spectrumsunday

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  4. My boy is now 8, currently undergoing CAMHS assessment, we adopted him but as soon as professionals hear adoption they say ‘oh, it’s not autism, it’s attachment disorder, but he is with us now over a year and we definitely see very similar signs you desrcibed. So we wait, we fight for him and honestly I am hoping he will get better as this nasty world out there won’t be very understanding… Thanks for your lovely and honest post!

    Liked by 1 person

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